Losing the will to live... Timescales, lost letters and lack of support from school :(

[JustBeingJuliet]

Ds has been "in the system" for nearly 2 years now, and, in February, we got a verbal diagnosis of ADHD, plus dyspraxia and possible ASD. We have given consent to look at medication for the ADHD, but, as yet, have heard nothing; no follow up letter, no diagnosis in writing.

The paed has been on holiday, the secretary that deals with everything single handed or so it seems has been on training courses, at meetings, and on holiday, and school are pushing for something in writing.

Finally got through to someone this morning and it appears they haven't received the consent letter I posted, and I haven't received the letter they sent asking for it, so we've been put to the bottom of the pile and forgotten about. They are behind by 6 weeks, so will probably be that long before we get any appointments through. We're also on the waiting list for an appointment to child psychology for another autism assessment, but been told the waiting list is about 18 months and the referral hasn't yet been approved, despite being told this was being done back in December last year.

It just feels like I'm banging my head against a brick wall. Ds is having a hellish time at school, and his behaviour is causing regular exclusions. He keeps sayings he doesn't want to be there, and I'm seriously thinking about taking him out and home educating, as at least then I'd know he'd be at home all the time as oppose to having to keep leaving work to go to school whenever they call. But then I need to work, and how the hell can I do that around HE'ing?

I'm so stressed with it all. Ds is unhappy, he has no friends as he keeps hitting them, feels like school just don't like him much sometimes, and I'm at the end of my tether :(

[2boysnamedR]

Are school supporting you getting a ehcp? Have you been referred to camhs?

Could you put a complaint in with the pead via pals?

You need that diagnosis letter and really waiting for it isn't acceptable

[Icimoi]

Have you asked for an EHC needs assessment? It sounds like you'd have a very good case for it, and at least the LA would have to sort out an educational psychology assessment within defined time limits. I'd suggest you also ask for a speech and language assessment, as ASD is a social communication disorder, and maybe an occupational therapy assessment if he has any sensory sensitivity or motor problems.

[bitbap18]

I'd be contacting PALS in the circs you find yourself in. They can intervene for you. Failing that, go to your local MP. You should not have to deal with that crap.

[JustBeingJuliet]

I spoke to the HT at school about an EHCP and they assured me they were on it, but as yet nothing has happened. I'm going in to see her again tomorrow, and will tell her I'm applying directly to the LA for one myself, as I feel school aren't taking any of this seriously, despite it being school that pushed for an assessment in the first place.

In all honesty, I don't feel this school is the right place for ds, as they don't seem able to deal with his behaviour, but there's no other primary locally with any spaces (all little village schools which are oversubscribed), and I don't know whether moving him would help him in himself, as he really struggles with settling into new places.

What concerns me is that he only has two years left of primary, and then we have to deal with the minefield that is an enormous secondary where he's bound to not fit in :(

I will look up PALS details tomorrow and speak to someone, thanks for that suggestion.

[JustBeingJuliet]

Icimoi we've seen an OT and a physio who have discharged him. I got referred to a "Parenting a Sensory Child" course, as they feel he has some sensory processing issues, and gave me exercises to do to improve his fine motor skills. We're also awaiting a referral to SALT.

[OneInEight]

We are about two years on from your position...

Undoubtedly, what has made the difference for my two is a statement and a place at a specialist school and so I would recommend you putting your energies into getting an EHCP plan. Having said that mine just have AS rather than the complication of ADHD in which medication can be very helpful.

It certainly was not a quick process although the exclusions meant we did get assessment at first asking - we ended up putting in the request rather than school. We did request a copy of the complete school record which they are obliged to produce although they can charge you for photocopying which provided us with lots of evidence. ds1 was actually permanently excluded whilst we were collating the evidence and whilst it was very distressing at the time it was actually a good thing in the long run as it helped him get the placement he needed in an EBD school which were wonderful with him.

ds2 struggled on in mainstream for another year but the impact on his mental health was very severe. I guess in hindsight I probably should have removed him when problems when first appeared but we were recommended to stay in the system otherwise no help would be given. He has got the specialist help now and is slowly improving but I am not sure he will ever be back to the happy, enthusiastic child we had until age 8 which is very, very sad.

I did give up my job because of the difficulties and although it was the best thing for us in the circumstances it really should not be necessary. At one of the early Child In Need meetings dh pointed out to everyone around that table that whilst they were at work he had had to take annual leave to attend and that basically all his holiday entitlement was being taken up by doctors or school appointments. They were a bit shocked to say the least as I don't think it had dawned on any of them.

[JustBeingJuliet]

Yes that's another problem I'm having; every appointment is on a bloody Friday and I do a different job Friday and Saturday to the rest of the week, so I've taken 4 days off from there this year so far. Then on top of that, every exclusion so far has been on a Friday as well! My employers think I'm taking the piss I'm sure! unfortunately, I'm a single parent and haven't got the option to give up work. Been trying to find something I can do from home, but it's not easy.

[senvet]

Just tell the school that you cannot pick him up on Friday.

They cannot expect you to turn up every time they fail to meet his SEN

They have an SEN budget so maybe they should set aside some 1 to 1 time each Friday for doing something positive that he can thrive at and help him feel good about himself.

They owe him a full time education to meet his needs.